Mary Lu DiLillo Mary Lu's journey

First post: Jun 22, 2016 Latest post: Nov 29, 2016
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Mom had a hip replacement in October, 2015.  She had been in so much pain for so long, that she was actually excited and relieved that surgery was an option and might provide some relief that would improve her quality of life. Surgery went well, and relatively quickly, the pain she had been experiencing for so long was significantly relieved..  She went through physical and occupational therapy but as fall went on and the holidays approached, she didn't seem to be improving much beyond the improvements she made during the first few weeks.  Anyone who cares about Mom enough to be reading this, knows that athletic excellence or even basic daily physical activity was not something Mom strived for!  So Rock and I, along with Ruthann and her grandchildren, were getting a little persistent in trying to encourage her to walk a little more, park a little further away from the door, go to the casino without her scooter...anything to get her to move a little more, use her new hip and gain some strength.  Her response tended to be "I don't feel like it".  Additionally, she wasn't eating much...and more concerning, her wine consumption had decreased dramatically!  Instead of increasing, time out of the house was becoming less and less.  She was spending more and more time with Steve Harvey, sitting in her jammies in her chair in the living room.  We justified this by saying that she was 80 years old, it was winter in Cleveland and who of us, given the option, wouldn't prefer to be in our jammies in front of the TV instead of trying to brave the Cleveland winter, day after day?  A little depressed?  It was February in Cleveland...being a little depressed goes without saying.   As spring approached, a routine visit to the doctor and routine blood work revealed that Mom was anemic.  She had a blood transfusion, which pepped her up a bit, but a follow up doctors appointment a week after the transfusion showed only slightly improved blood counts.  The doctors suggestion was to wait another week to see if the counts improved.  But Mom was tired of feeling so tired so the doctor ordered some outpatient testing.  We made the appointments to have the tests done, but as we waited for the appointments, she was getting weaker.  On Monday, May 9, we had Mom admitted to the hospital and were very insistent that she not be released until all the tests that they wanted to do, were done.  Based on her still dangerously low blood counts, they did a bone marrow biopsy and within a day the preliminary results showed that Mom has Acute Myleoid Leukemia which is a fast-growing form of cancer of the blood and bone marrow. Primary symptoms:  lethargy and fatigue, loss of appetite.  Successful treatment options for an 80 year old patient are limited.  Mom is being treated by a team of physicians she likes and is comfortable with at the Cleveland Clinic.  We feel as though she is in good hands from a medical perspective.  As of today (6/20/16), she has completed her first round of chemo (which involved chemo shots every day, for 10 days).  She now has an 18 day break, during which time she will need to have 2 bone marrow biopsies, and several blood draws, as they need to keep a close watch on her blood counts.  Blood transfusions may also be necessary during this time.  Then, if she chooses, it starts all over again: 10 days of chemo, 18 day break.  Mom deciding to continue will depend upon what the doctors have to say about the medical success or progress of the treatment, and more importantly by her determination as to how she feels and tolerates the treatment.  As of today, she's not feeling very well.  The first 10 days of chemo were not too terrible as far as nausea goes, however, she was totally zapped and had no energy.  She is now on day 4 of her 18 days off, the nausea has gotten worse, and she has even less energy.  The doctors have said that during this first round, it would get worse before it gets better.  Now we are praying for and waiting to see the "better".  We want to get her to the Lake.  (Sam the Cat is definitely the Mayor of McNaughton Lane, but Mom is the reigning Queen).  We want to get her to the casino.  We want to take her out for chocolate martinis. We want her to have the energy for you to come and visit.  To chat on the phone.  Right now, none of that is happening.  Thank you all for your calls, your cards, your support, your concern and your love.   If we are not calling you back, it's because we are so blessed that so many of you love and care about us, and we can't keep up with the calls.  We will do our best to stay in touch.  Feel free to continue to call but if we don't respond, check here and we will try to keep you updated.  And a special thanks to our "A" team for helping us get her where she needs to go:  Lanie, Shirley, Judy, Wayne, Harriett and Bert...we appreciate you more than you will ever know.

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